Towards the Realisation of the Ideal cbr; Context and Reality in Low per-Capita Income Rural Area of Flores Island, Indonesia

Institutional-based Rehabilitation as ‘Referral Center’?

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2.2Institutional-based Rehabilitation as ‘Referral Center’?

In order to promote a common approach to the development of CBR programmes, in 1994 three major UN agencies: ILO, UNESCO and WHO issued a joint position paper on CBR. This first joined paper on CBR was titled: ‘Community Based Rehabilitation for and with People with Disabilities’ (ILO, UNESCO and WHO, 1994).

Within a decade after the release of the first joint paper, some progress was made. The International Consultation to Review Community-Based Rehabilitation in Helsinki, Finland, 2003, marked another milestone. UN Organisations including WHO who organized this consultation, Non-Governmental Organisations (NGOs) and DPOs made a joint effort of reviewing CBR. The focus of the review was to identify some renewed efforts which can ensure that all communities with people with disabilities irrespective of age, sex, type of disabilities and socio-economic status, exercise the same rights and opportunities as other citizens in society – “A society for all” (ibid).

The recommendations agreed from this international consultation were then incorporated into the ILO, UNESCO and WHO’s Joint Position Paper 2004. This extensive and detailed joint position paper titled ‘CBR: A Strategy for Rehabilitation, Equalization of Opportunities, Poverty Reduction and Social Inclusion of People with Disabilities’ marked another evolving progress in the conceptualization of CBR with the emphasis continue to ensure that ‘the needs of people with disabilities being addressed by their communities’ (ibid).

Five concepts were highlighted in the strategy as relevant concepts to CBR and of stakeholder involvement; i.e. ‘Disability and Rehabilitation’, ‘Human Rights’, ‘Poverty’, ‘Inclusive Communities’ and ‘Role of Organisations of Persons with Disabilities (DPOs)’ (ibid). The concept of ‘Inclusive Community’ highlights potential radical challenges of CBR as a reflection of the social model of impairments.

In both Joint Position Papers (1994 and 2004) it was acknowledged that within CBR there is still a need for specialized services from specialists outside the community. The 1994 Joint Position Paper extensively described these specialized services as ‘Referral services for people with disabilities’ highlighting the fact that although community is able to handle a large part of rehabilitation process, there are situation where the community do not have the expertise to perform certain task. This is where the linkage between community and referral services outside is seen important (ILO, UNESCO, WHO, 1994: 12-13).

These referral services are being highlighted in the Joint Position Paper 2004 with the emphasis on it being part of the aspect of multi-sectoral support for CBR. The three most relevant aspects according to the Joint Position Paper 2004 are the support from the health sector, educational sector and the employment and labour sector (ILO, UNESCO and WHO, 2004: 18-21).

It was not clearly mentioned in these documents whether these referral services can be provided by either specialized institutions providing IBR services, or home visiting care providers. However, the mentioning of these referral services as supporting aspect within CBR strategy, open up the possibility to reduce the tension between IBR and CBR strategies and provide room for complementary role of these two strategies.

Nevertheless, the documents did not clarify many aspects and dynamics of the referral nature of specialized services. The concerns over the high cost of IBR, the aspect of institutionalization vs. inclusion, and how to ensure the institutional services will not foster dependency were not clearly addressed in these joint papers. The outcomes of which, still leave a partial understanding of the frontiers between rehabilitation strategies and how to best combine different approaches in terms of fulfilment of rights of people with disabilities.

2.3The challenge of practical and ideal CBR; CBR as a concept and a practice

Referring back to historical development, in human history the existence of rehabilitation prior to establishment of formal rehabilitation services by institutions has always been in the community. Flinkenflugel (2004: 7) wrote, ‘In any communities, and at all times, people with disabilities have lived their lives and have (re)habilitated themselves in the absence of formal trained rehabilitation workers and with or without the help of family and community members’. For many children with disabilities, in some regions and/ or communities or social group, it is possible that the only rehabilitation they can access is within their own communities. This kind of CBR need to be acknowledged as a pre-existing CBR to the promotion of CBR concept which derived from external agencies.

The process of conceptualization of CBR has shifted in more socially radial terms, since the WHO’s 1976 policy document. The WHO, ILO and UNESCO defined the concept of CBR in the 1994 position paper as follows:

CBR is a strategy within general community development for the rehabilitation, equalization of opportunities and social integration of all people with disabilities.

CBR is implemented through the combined effort of disabled people themselves, their families and communities, and the appropriate health, education, vocational, and social services (ILO, UNESCO and WHO 1994: 7).

In the 2004 joint position paper there are some significant changes in this concept. From social integration (1994) CBR concept has been defined in 2004 as moving further towards social inclusion with more emphasis is placed on the role of organisations of people with disabilities (DPOs) to demand governmental services (ILO, UNESCO and WHO 2004: 2). These changes appear to reflect a paradigm shift where the focus on a rehabilitation programme is changing towards more of an empowering model.

The ideal CBR which adopt the social model of disability has been defined by various authors as the following:

  • CBR focuses on empowerment, rights, equal opportunities and social inclusion of all persons with disabilities (PWDs).

  • CBR is about collectivism and inclusive communities where PWDs, their families and community members participate fully for resource mobilisation and development of intervention plans and services for PWDs.

  • CBR needs to be initiated and managed by insiders in the community, rather than outsiders, for its sustainability (Cheausuwantavee 2007: 101-102).

However, in practice there are still a lot of challenges in the adoption and implementation of this ideal CBR approach. Part of which is due to the fact that many of the concepts in CBR are still far from being clear.

One very important question lies behind understanding of the strategy: What is actually a ‘community’ for Community-based Rehabilitation? Smith (2001) takes the three different ways of defining community as proposed by various authors:

Place. Territorial or place community can be seen as where people have something in common, and this shared element is understood geographically.

Interest. In interest or ‘elective’ communities people share a common characteristic other than place. They are linked together by factors such as religious belief, sexual orientation, occupation or ethnic origin.

Communion. In its weakest form we can approach this as a sense of attachment to a place, group or idea (in other words, whether there is a ‘spirit of community’). In its strongest form ‘communion’ entails a profound meeting or encounter – not just with other people, but also with God and creation. (Smith, 2001).

Thus there are three different ways of conceptualizing community however it has never been clarified in any CBR strategy paper, in which way the concept of community is being used.

Defining the term –based in Community-based Rehabilitation could mean literally the location, which means that the services are offered in the community setting or it could mean that the community itself is the agent in providing the services. This difference is revealed in the following two quotes.

CBR provides for persons with disabilities to have an opportunity to get access to rehabilitative care and services in their own communities. (Plianbangchang, 2009)

WHO, ILO and UNESCO view CBR as a strategy that can address the needs of people with disabilities within their communities in all countries. The strategy continues to promote community leadership and the full participation of people with disabilities and their organisations. It promotes multi-sectoral collaboration to support community needs and activities, and collaboration between all groups that can contribute to meeting its goals (ILO, UNESCO and WHO 2004: 2).

Clarifying what ‘-based’ means can shed light on the paradigm shift required to move from treatment towards inclusion. If community-based means literally taking place at the community then it could well mean that it aims at treatment. However if community based means that the community owns the processes of providing the services and ensuring full participation of people with disabilities, then it aims at inclusion. These two ways of approaching what ‘-based’ means will give a different meaning to what ‘community’ means. On one hand, it means community is a ‘place’. On the other hand, it means community is a place where shared ‘interest’ took place: where there is a system of values, beliefs and practices.

At a closer look, the current conceptualization of CBR has not arrived at common ground about the definition of ‘-based’ yet and as such this also place significant challenges to understanding CBR as a strategy or practice. In particular, currently there are two practical interpretation of CBR: (a) as a rehabilitation ‘into’ the individual’s community and (b) CBR as involvement of communities in the rehabilitation process.

The third element to clarify is the meaning of ‘rehabilitation’. Some significant progress in defining what ‘rehabilitation’ means, has been achieved in the past 3 decades. At the beginning, ‘rehabilitation’ was referred solely as medical aspect only. However, within the evolving of CBR, the concept of ‘rehabilitation’ remained dominated by the medical model.

Rehabilitation means a goal-oriented and time-limited process aimed at enabling an impaired person to reach an optimum mental, physical and/ or social functional level, thus providing her or him with the tools to change her or his own life. It can involve measures intended to compensate for a loss of function or a functional limitation (for example by technical aids) and other measures intended to facilitate social adjustment or readjustment. (The World Programme of Action concerning Disabled Persons,1997)

Rehabilitation and habilitation are processes intended to enable people with disabilities to reach and maintain optimal physical, sensory, intellectual, psychological and/or social function. Rehabilitation encompasses a wide range of activities including rehabilitative medical care, physical, psychological, speech, and occupational therapy and support services. People with disabilities should have access to both general medical care and appropriate rehabilitation services (World Health Organisation, 2009).

Therefore, in the use of the word ‘rehabilitation’ there is still a notion of the ‘problem’ is individuals with disabilities. For those who become disabled due to accident or illeness, the term ‘rehabilitation’ means the re-adaptation of the individual to the community where they live. The term habilitation is appropriate to the context of those who are born with impairment. The word ‘rehabilitation’ connotes a need for being ‘fixed’ and this become a contradiction to the whole aspect of social model of disabilities where the barriers to full participation of people with disabilities are socially constructed. There is a need to weight where the focus of rehabilitation is: people with disabilities or the community acceptance and practices.

Some authors mentioned the shift in term of ‘the view that CBR is merely a form of ‘therapy in community’, to an approach that promotes inclusion, community participation and community ownership of programmes’, where ‘it also recognises that disabled people should have access to all services that are available to others in the community, such as community health services, child health services, social welfare, education etc ‘ (Thomas & Thomas, 1997: p.13).

A similar view to the previous elaboration of the ideal concept of CBR. On practical terms, many CBR programmes have not arrived at this level where there is any existing community engagement beyond families/ household level. The interpretation of such programme as a CBR programme then become a question whether CBR is only a rhetorical concept of what has long take place in the history of rehabilitation of persons with disabilities which either falls on their own capability or on their family/ household.

On the other side of this rhetorical down side of CBR concept, ensuring an appropriate degree of community participations means the community has a certain level of understanding and acceptance towards people with perceived disabilities. In this area the existing challenge is that the level of understanding and acceptance varies in many communities. Furthermore, in many communities there may be a very low level of awareness about rights of people with disabilities, let alone achieving understanding and acceptance of them appearing and acting in public.

Of course we do have to acknowledge the existence of communities which have strong positive attitude towards people with some or all forms of disabilities due to their values, beliefs and practices’ system. But, the following differences still present key challenges to the application of CBR both as concept as in practice:

  • Community differential acceptance towards people with different type of disabilities varies; e.g. a community can have a better acceptance towards a person with mobility impairment but less of acceptance towards those with mental disabilities.

  • Community understanding of disability varies; e.g. a community can have a better understanding towards accident as a cause of disability than of those which are caused by genetic or malnutrition problems.

  • Community practices are often driven by economic sense/ productivity; e.g. a community can have a better acceptance towards people with disabilities who can still perform work but not of those who in their view are less productive.

  • Community values and belief systems are often based on ‘non-scientific’ and historic consensus and can vary based on communal common sense; e.g. a community might belief that disability exist because of karma and think that isolating a person with mental impairment is the right thing to do to avoid further ‘curse’.

The above variation in the community acceptance towards disability place challenges in ensuring community ownership of and empowering process and in fact if we look at the following assumptions behind CBR strategy, there are more challenges as well to be addressed:

  • Community need to have the commitment to care physically for people with disabilities at moments of ‘medical’ needs

  • Community need to have the rehabilitation and empowering skills to care for people with disabilities

  • Community need to have the resources and funds to rehabilitate and empower people with disabilities

  • The basic services (health and education) need to be functioning reasonably well at the community level

  • Government takes a role in resourcing and promoting care for people with disabilities

It is important to ensure that all the above elements exist to fulfil the two objectives of full CBR:

  1. To ensure that people with disabilities are able to maximize their physical and mental abilities, to access regular services and opportunities, and to become active contributors to the community and society at large.

  2. To activate communities to promote and protect the human rights of people with disabilities through changes within the community, for example, by removing barriers to participation (ILO, UNESCO and WHO 2004: 2-3)

In the part of activating community as the second objective of CBR, there is a problem in the strategy. While CBR is initiated from outside the community, the change in itself then becomes a paradox. CBR with external interventions might change a ‘community’ in term of structure. As the community adopts changes in its beliefs, values and practices’ system, the existing structures collapse and are replaced by new ‘ideal’ community. This change in itself challenges the notion of ‘inclusion’ because in practice it denies communities the very aspect of self-empowerment, in the name of empowering people with disabilities

The mechanism proposed by WHO, ILO and UNESCO is a less active change mechanism. However, it is still vulnerable to another potential paradox. Externally initiated, locally owned process with the assumption that in the community certain degree of development is already in place and some of the partners; i.e. the community development committee, organisations of people with disabilities and other non-governmental organisations, are there to assist.

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